My New Life with a Feeding Tube

I have been suffering with Neuroendocrine (Carcinoid/ NETs) Cancer for the past 9 years. This is no secret. I have been blogging for several years about it as well. However for the past 3 years I have also have developed chronic pancreatitis from the treatment/ medication I use to control symptoms of the syndrome. As a result my digestive system does not deal well with food much anymore. The past 6 months has been a struggle just keep food down and even keeping liquids in me has been near impossible.

I started to lose weight and have spent many weekends in the ER getting fluids and nutrition via IV. My GI specialist has been trying to talk me into getting a G-tube (feeding tube) put in my abdomen for several months now, but I was very reluctant. For some reason having a tube in my stomach and being tied to an IV pole most of the day did not thrill me much. As a matter a fact it sounded like prison to me. A kind of hell if you will. I already am a prisoner to this cancer.

After months of fighting persistent nausea, throwing everything I ate up. Or being tied to the bathroom because the diarrhea was so bad I could not leave. I finally sent a note to my GI doctor asking how soon we could do this. Keep in mind this was Aug. 3 a Monday night. He emailed me at 9pm that very night, saying he was going to call me in the morning to give me a time to be at the hospital on Tuesday morning Aug. 4th. I was admitted Tuesday midday and had the procedure in the evening.

He put in a G-tube Tuesday night, then on Wednesday he went back in and put in a J-tube. I was pretty bad off by this time and they really had to work hard to stabilize me. I was dangerously dehydrated and malnourished. They gave me bags and bags every day of antibiotics, phosphorus, potassium and other things along with trying to figure out how to keep me from throwing up all the formula they were trying to pump into me. On Friday night they had to take me back in because the placement of the J-tube and somehow made its way back up into my stomach (a rare complication). They sutured it back in place and started over with the feedings.IMG_20150815_170139IMG_20150815_170031

I finally started to improve and was making good progress. Was about that time I found out I was not going to be able to do what is called bullous feeds (where you can do a day’s feeding in an hour or two). I have to do it over the course of 18 hours. That leaves me a total of 6 hours a day where I am not hooked up to my “little friend” (the IV pole) as I call it. This was not the deal I signed up for and I was not happy about this. However my GI doctor explained to me that because of how bad off I was and that I am not the normal person who does this. For me this was a last resort. I had no other options. I could have done the whole PICC line and TPN thing again, but my risk of infection and even death is much higher.

After thinking about all of this I guess it is not so bad. I can get what I need to get done in 6 hours without being tied to the pole. I ended up spending a total of 9 days in the hospital and was able to be home to see PA start her first day of third grade. That was priceless and PA was so happy to have her mommy home finally. She has such a hard time.IMG_20150814_094116

Another thing I have been able to do since being home is going with my older daughter to try on and buy her wedding dress. What an amazing thing to do. She is getting married in November and I will still have the feeding tube. I hope I will still be doing ok and not in hospital. MY cancer at this point is advancing fast and my doctors honestly don’t know how to treat it. I really need to go see a specialist, but with the wedding coming then my husband needing back surgery in Jan. I need to try to wait until after all of that. I’m hoping I can stay stable till then.

 

Life is not perfect with this. In fact it really kinda sucks, but it is keeping me alive right now and for that I am so very grateful…

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8 responses to “My New Life with a Feeding Tube

  1. Blessings to you! I’ll keep you in my prayers.

  2. Danica – do you mind if I see where I can fit this into my Blog Facebook site? I won’t be offended if you say no!

  3. Read this via Ronny’s re-post….I really do feel for you so much – I have ‘been there’ to some extent in that I needed IV antibx treatment daily, and recurring hospital re-admissions, also feeling ‘imprisoned’ as the disease was getting worse. I was ‘lucky’ in that radical treatment (trisectionectomy) sorted out the root of the problem, but we’re all so different I know may be irrelevant to your case. Your spirit sounds strong, and that will stand you in good stead, as well as the thought of seeing your daughter’s wedding – more broadly, I hope the medics can weave a way through your problems to find a way to help more fundamentally. Keep fighting – will be thinking of you!

  4. Kerrie Gai Ward

    I have been reading through your blogs I am in Australia and have had NET for three years. I started with it in my bowel and now it is in my breast liver lungs bladder and small bowel as well. I am having a challenging time at the moment with trying to suck air into my lungs. So am having a day of taking it easy and went back and read your notes from September 2011. I have copied the paragraph about the look good Cancer and put it in as my status. it is so well written. It is very much how I feel. We feel like crap and try and keep on going where possible but so often we need to bow out gracefully. I felt guilty for having cancer because every one kept saying but you look so well. god bless you I hope you are able to get all the plans together for your eldest daughter my thoughts and prayers go out to you.

    • I am sorry you are having such a hard time. I have no problem with you quoting me. I am happy you could relate. Too bad we are so far apart LOL… If you want send me an email and we can connect on Facebook. I hope you are able to feel better and hope you have good care. I have no idea what it’s like to get treatment where you are, but I hope it is good.
      Thank you for writing

  5. Hi there, just read your post – new life with feeding tube. Great article, well written. I can relate to your feelings, anxieties, etc. I’ve had a nasogastric tube for 2 months. I’m on 10 hourly feeds at home – going in for a permanent peg in my tummy in 2 months time. I’m in Scotland UK. I get very good care and I have faith in my clinicians. Look forward to reading more of your blog posts ☺️